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Author
Topic: Living with AIDS and working for a living? (Read 24053 times)

Just wondering if there are others who are living with AIDS and have been able to continue working for a living? I was diagnosed with AIDS in 2004 and had a CD4 count of 11 and a VL of 100,000. I went on the meds and my count has since increased to 184 and I'm undetectable. I've continued to work the entire time for a company in a office job (although it has been sometimes difficult). It seems like other people I have met with AIDS are all on disability. Are there others out there with HIV/AIDS who have been able to continue working?

I had a VL off the charts and a CD4 of 22. I had PCP and MAC. I took three months off to recover. I have been and will continue to work full time until I die. I get too bored. I could have went on disability but I need to work. So, I work, I am a flight attendant, travel all the time. Fly bunches of hours every month and live life to the fullest.

Since being diagnosed 9 years ago, I have, because I could. Stratospheric CD4 numbers, lipid problem, depressed on and off. Have been in hospital 2 days for food poisoning once. Started my own company 4 years ago.Sometimes I take a nap in the afternoon, I can decide freely about my time,have to travel around a lot, work in a tropical climate, it all helps.That said I have been through a hotel fire and the tsunami both in which I have lost clients, and then there has been SARS, avian flu and an economic bust but I made it through.I understand for many though working is not a possible choice.

Just wondering if there are others who are living with AIDS and have been able to continue working for a living? I was diagnosed with AIDS in 2004 and had a CD4 count of 11 and a VL of 100,000. I went on the meds and my count has since increased to 184 and I'm undetectable. I've continued to work the entire time for a company in a office job (although it has been sometimes difficult). It seems like other people I have met with AIDS are all on disability. Are there others out there with HIV/AIDS who have been able to continue working?

You will probably find that those living with AIDS (as opposed to HIV) are more likely to be on disability, since they are more likely to deal with health issues (OIs for example). You're also likely to find that the longer someone has been living with the virus, especially if they were diagnosed pre-HAART, are more likely to be on disability, than those who are relatively newly diagnosed. Again, because they are more likely to be dealing with significant health issues.

But as you can tell, there are people out there, (and lots of them), who continue to work (both those diagnosed with AIDS and those who are HIV positive but have not reached AIDS yet). Generally, it's a burden financially to live on disability, so where people can continue to work, it's a blessing.

I had my stint with 35 CD4 and a few OIs.. and tried to go back to full time work and it made me even more tired.. I've had a month off, got another one to go, then thinking I'll be going back to full time work again. Even with AIDS and OIs I couldnt get on disability in Australia, apparently I wasn't sick enough.. go figure!

I was unemployed when i was diagnosed with AIDS (I think I qualify for that since my CD4 was 165 but no OP's), but I never qualified for disability. Like others had said I did not even qualify if I tried.

My ID Doc encouraged me to keep on looking for work, or be active (as he put it), and he has a point of mentioning it on every visit. In all honesty if I did have a job I don't think I would have handled it well for the first few months after starting on meds!.

I work part-time these days(usually about 12 hours a week),which feels a lot more manageable, and is much better for my overall health(however there are some issues with my current employer, which i may post about another time...). I also do some voluntary stuff, which i really enjoy.

For me, I need to be doing something, for however many hours per week... otherwise I feel like HIV/AIDS (and yes, I'm a paid up member of that club) begins to dominate my identity too much.

Yep, 40 hours a week, but I refuse to do overtime since I found out about my Unwanted Companion. Right now I'm precepting someone, so not doing (too much) hands on stuff. The shit hits the fan again next week though.

I was diagnosed positive in 1985, received an aids diagnosis in August of 2003.I still continue to work, But, in 2004 I had to take a position change because of neuropathy. Otherwise, I am still managing to work 40 hours a week, and hope to for a while. There is no way, I can do the things I used to do, so the type of job, and how physical and demanding that job is, can make a differance. I very much enjoy going to work everyday. Plus, I need my insurance !! I think that keeps me going also. Since that diagnisis back in 2003, I haven't missed more then 3 days of work, so I feel pretty good about that.

I was diagnosed in 1992 and have always worked full time.....and most of that time I've had two jobs. Right now I work full-time at an ASO (The Pittsburgh AIDS Task Force) and part-time for Macy's selling women's shoes. I love both jobs and I think I would go a bit stir-crazy if I didn't work.

I was diagnosed in June of last year (just about a year ago) after falling very, very sick. My initial numbers were CD4 30/VL 650,000. Went on meds immediately. Had PCP, Thrush, and Wasting at the time. Took a couple of months off work to get my strength back and "process" my situation. Have been dealing with MAC caused by Immune Reconstitution Syndrome since July of last year when I went on the meds. Pretty much everyone at work knows and has been very supportive. I still manage to put in at least 50 hours/week with pretty much no problem.

Diagnosed 1983, continued to work for Eastman Kodak for another four years.1987 Quit, and purchased a Kenworth and started a new business driving this truck for 18 months. Was sick three times.1988 Sold the truck, and drove a cement mixer for a year.1989 Moved from California, purchased a rundown 12 unit apartment building and commenced to remodel the whole thing ourselves.1994 Had to stop work, due to PCP. Sold the apartements. Went to full AIDS.1995 PCP the second time around. Moved to a new town and purchased another fixer-upper. Went on full SSDI.1999 Sold home and moved to Arizona.1999 to 2006 Worked full time for myslelf, fighting to get services to the clients here in the deserts of Arizona. Plus started an AIDS Service Organization in 2003, and have been running it for the whole time.

I guess this is self explanitory.

In Love.

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Yep,been working pretty much full time since my '92 diagnosis. Once I got off the pity pot and realized I was on my own there was no other option. Believe it or not the best "fit" for me the past seven years has been waiting tables. Momma would be so proud of her college educated son. In reality I make more in twenty hours than I ever did working full time. My days are free which allows my body time to adjust...plus a nap if I need it. If I need time off all I have to do is cover my shifts. Downside no health insurance and all the kids call me "Flo".

If you are working full-time and earning a good living, my advice is to hang onto it as long as possible. It may be difficult to work somedays, but believe me, going on SSD and not working brings on a whole new set of difficulties.I would take the former over the latter any day.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Yes a full time job, 40 to 60 hours a week. My partner and I also have 2 children. One just graduated from High school last Friday and the other will be in 5th grade next year. So....yes I have a full time job and a full time job. Both my partner and I , both positive, lead full lives. No it is not always easy. I have been on meds for a year now and my partner just started and he is having a few issues right now but I think that will go away with time. We are blessed to continue with what we have and provide for our family as difficult as it is at times. I'm not stopping until I drop!Keep on moving, life is good at work.

Been positive for 15 years and worked full time since the age of 18. Currently I work full time and attend school full time. For me, I literally have to be dying to call in sick. Work is my life. Although getting up in the morning can be hard sometimes, it's work that gives me a reason to.

I think I would go crazy if I didn't work (even though I sometimes think I would go crazy anyway!). Since I found out 12 years ago, I haven't not been without a job. I'm a medical social worker and the biggest problem I have is trying to re-set boundaries. I like to think I'm doing great things but sometimes I feel nobody gives a shit. I work because the insurance is great. And not everyone knows at the hospital about my status although, since I had to have surgery last year, I suspect more people know about my status that I think.

What is a bother is that I don't necessarily find the job all that satisfying but I make way too much money to quit and adventure somewheres else.

Yep, 40 hours a week, but I refuse to do overtime since I found out about my Unwanted Companion.

Yeah overtime's a 4-letter word in my book .......whenever that word is uttered, it's wise to exercise caution i.e. suspect that office politics are involved ... okay, that's been my experience so i'm bitter. blbldude, like penguin I now work part time ..... I feel like a loser because I used to work 40 hours and now it seems my body won't let me

I continued to work after my HIV positive diagnosis in 1994. I was promoted to VP, produced a radio talk show, and served as Chief Designer of our product line for two years after my initial diagnosis. The firm was aware of my HIV status from the beginning. My shares in the firm were bought out with my AIDS diagnosis in 1996 while in the hospital with PCP. The company felt that there was too much risk of having a top management person going out on a workers' compensation claim. I was technically bought out but can consider myself fired.

I do know several people here in Sonoma County and in Los Angeles who are currently working with an AIDS diagnosis. Most of these people are working in healthcare and in the local ASO's.

As Chief Designer of Industrail Safety programs, I have completed a new line of product that would be in direct competition with my former employer, which I plan on release later this year. Currently, I am working full time as a member of the Sonoma County Commission on AIDS, the Persons Living With HIV/AIDS Committee, Basic Needs Committee, Executive Committee, Funding Allocation Working Group, serving on the AIDS Nutrient Bank Board of Directors, as of tonight a Board Mermber of Project Africa and plan on developing a radio talk show on HIV treatment and care issues. In my free time, I cover the press for all Commission on AIDS activities and have designed, written and marketed and own the site www.Commission-on-AIDS.org. On Sundays, I do the yard work for a disabled woman because she has a very picky landlord and could lose her house if the landlord was not happy.

I work more than full-time but do not get paid for my efforts. Have the best dayMichael

I work full time and plan to continue indefinitely. I like $$$ too much. A friend keeps telling me to stop working and live on my co.'s disability policy ... plus I have a $2K/month personal disability rider on top of that... so I would be sitting pretty sweet. However, I doubt in this day and age, I could do that unless I was REALLY sick.. and stayed sick. AIDS alone is not good enough to be called disabled anymore.

I still work 50-60 hours a week, still save for retirement, work on the farm and we entertain friends quite a bit. I may have this virus but it doesn't have me. Live life like there is no tomorrow and have a job with great health insurance as long as you can.

I retired from the military still running 3+ miles going on 15 mile hikes and went into the construction buisness work 40-60 hours per week (hard labor) and my cd4% was at 11% which is AIDS, never stopped working have not even had vacation. Diagnosed Sept 2005 when I found out it was this low of a count, but never have been sick for years...not even a cold...hopefully this keeps up...knock on wood. CD4 now over 18% at 405 about 6 months later.

I was diagnosed with AIDS back in 2002 and except for taking 3 months off after initially finding out I have continued to work full time.I think I would die if I could no longer work as I would feel so unproductive.

Aids diagnosis in '93. have been too sick to work for about 2 years. Now I have 2 jobs, work as a nurse for 28 hours and am a singer/singingteacher, teaching 30 students, 3 ensembles and 4 choirs, and rehearsing almost every evening.....

Just what are the details of Disability anyway? Never been on it. Can you live reasonably well? Does it pay the same amount as you would have made at your job or is it just minimum money like Un-Employment?

Disability never pays the same amount as you would have earned from your job. The amount varies depending on whether or not you were working, and therefore contributing to Social Security, and for how long, as well as if you have private disability insurance. If you have both, the total may not exceed 2/3 of your income while you were working. For those who did not have enough quarters in which they contributed to Social Security through work before becoming disabled, there is a guaranteed minimum (SSI) which is a very small amount and very difficult to live on. However, for those who are on SSI, they automatically get Medicaid for health care coverage. Now, for those who get greater than the SSI amount, a lot of them become disqualified from getting Medicaid for health care coverage. Medicare does not kick in until 2 years after one is disabled. So for that 2 year period, a lot of people fall through the cracks as far as health care coverage goes while being disabled, unless they can afford to pay for COBRA continuation coverage if they had insurance through their work before bieng disabled, or unless they qualify for some other government program that has a higher income cutoff (e.g. Ryan White) than Medicaid.

Bills, which I struggle to maintain, are another two fifty to three hundred.

Car insurance is ninety.

So I have little over a hundred dollars a month for food, medical which is not covered under Medicaird/Medicare, gas, and fun.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Just what are the details of Disability anyway? Never been on it. Can you live reasonably well? Does it pay the same amount as you would have made at your job or is it just minimum money like Un-Employment?

The other problem with disability income is that it does not grow (well not by very much). What you get is what you get (I think there is small component of the government's insurance that increases with inflation). If you were working you could expect higher wages, through raises, promotion, job changes, etc.. You don't get that benefit under disability, so while even those who may have private disability insurance (that pays a decent amount because of their high earnings), eventually as the cost of living around you increases your standard of living decreases.

i was diagnosed in 1990. I have always worked 40 -60 hrs. per week until Aug 2005. I went on disability March 2006. Plan to go back to work cause it's boring and I need something to do each day to keep me busy. I love to work.

Guess it depends on what you do for work. Keeping insurance is tied to work. My last SS statement/info stated "if you became disabled today you would receive $1550 a month”. That wouldn’t be much, but if I lived simple and no longer had all the gas/car expenses I could live on that. And getting my 401k I could pay off the house and most of what I owe. So I have thought about it. Working long hours, and nights to boot, it does get very taxing and I ask if its worth it? But in reality, I'm not really sick. I don’t feel sick. I don’t look sick. So I would feel a little guilty. And to be at the mercy of the "system" for your med coverage and any doc bills that pop up, I'd worry. Technically I was aids in the beginning. My numbers no longer fall in the aids category. So I don’t even know if I could get on SSDI. No idea how that works, or how the meds would be covered till SSDI kicks in. Too many unanswered questions. But if I did get sick or could no longer deal with holding down a job, I would not feel guilty about shooting for SSDI benefits. I'm 53 and I wouldn’t mind retiring, if I could. Still so much to explore on youtube an xtube.

Diagnosed 5 1/2 months ago. Have had some significant side effects issues with meds but continue to work full time. Luckily, I'm in a job where I was able to do that even with the side effects. As the side effects lessen, I find I'm not up to doing everything I used to do, but I can still do my job quite well. In the education system in my state you can take early retirement after 25 years of service. This was my 18th year. So six more years and I could take early retirement which would entitle me to keep my group insurance forever (at my expense though). I may or may not be ready to retire at that point. I like what I do and I enjoy working. (Does that make me another type A personality?) My plan even before my diagnosis was to take the early retirement and then start a second "part time" career that would allow me the freedom to do some traveling or other things I wanted to do. So that may still be my plan. Teacher's in my state do not pay into social security, so we have no social security coverage. I did work enough time in high school and college and part time summers to qualify for social security, but as of December 2005 I did not have enough quarters in the past 10 years to qualify for disability. I have done some adjunct teaching work in the first half of this year that would finsih out those necessary quarters. But hopefully that's not something I'll need to take advantage of. I find I do get a bit more fatigued than I used to, but nothing bad enough to impare my work performance. And I can still do a 12 to 14 hour day when duty demands it.

Good point Cliff,about inflation.The only way in the U.S to overcome the 10 trillion dollar deficit the republicans have left us with is to inflate the currency(print lots of it)its the only acceptable way.This is very scary as the price of almost everything will go up and our standard of living will worsen.Im thinking of putting my money in a Canadian account. I was recently diagnosed and have a disability policy thru my job,so far Im lucky.

Yes, indeed. I have been positive since 1991. Not only working but working, way too much as in 60+ hours/wk, and occasional work 7 days a week. The truth is, I have never had a permanent job that was "kick-back." There is nothing like a fat paycheck and group plan insurance to heal the sick. Seriously, I am a little tired of the not-so-sick lying around home on Disability. Notice I didn't criticize the truly ill. I have friends in the latter category. When sick, I also like to be home near my very own bathroom, and not having to face the world. But when I am better, engagement with the world does me a world of good. I plan on working another 5-10 years before retiring, if my HIV allows me. So far I've been blessed so far .

What about the possibility that staying out on disability will prolong your life, make you happier and provide you with time to "do what you always wanted to do"? Isnt it possible that just as some need to work...some dont?

I have been poz for 10 years. When first diagnosed i had a tc count of 99, but my Dr. told me that after a couple months of meds, i'd be fine - i had no OI's.

I had the chance to go on disablity (my initial counselor told me i should, but i listend to my dr), but didn't. Since then, i have changed jobs, 3 times (all promotions), moved 3 times, and my health has continued to improve every year!

I think in ten years, i have missed maybe 12 doses of my meds, and started excercising, and watched my diet. I don't do drugs (never did), watched my booze intake - basically lived a balanced life.

I have taken mabye 6 sick days in the last 10 years, have always found employers with great benefits, and also made sure i took advantage of LTD, and Short-Term Disablity, Life Insurance (all guaranteed issue)...that's really made me sleep really well at night!

I just got back from my annual checkup - VL: Undetectable under 50 copies/TCell's 890. My Dr is great!

I credit my 1st meeting with my PCP for setting my life in order. He told me that HIV was VERY MUCH a disease i could manage if i followed my regimine, lived a balanced life, and didn't "give up."

I feel so bad for so many guys who put off getting tested,and then find out their body's defenses have been so ravaged that it may NEVER fully recover.

I work all year long to help raise money for our local HIV/AIDS Organization and to date have helped raise over $1/4 of a million dollars since 2000.

My partner of 10 years and I recently bought our dream home and are enjoying our lives here in Tampa!

Yes, i am fortunate, but I know i have worked very hard at being healthy, takign my meds, not using TINA/X/G, etc. HIV may end up killing me, but i choose to belive what my 1st Dr told me: "Bob, you're more likely to die in a car accident than HIV/AIDS if you just take your meds, watch your health and live a balanced life."

Don't laugh!! after the initial shock of finding out my positive status I was actually looking forard tothe day that I could sit home and collect disability. I thought that i would finally after 25 years of working be able to take a much needed vacation and just relax. It didn't quite happen that way. i have been poz since 1997 and i am stil;l working and attending Nursing school FT. That is what happens when you have a chronic manageable disease. At least that is what the US government says.

I was infected November of 03, got sick (seroconversion) December of 03, was diagnosed in April of 04, and started meds in August of 04. My CD4 count was dropping quickly and was somewhere around 350 and the bug count was reaching for 200,000.

After my seroconversion my life changed and I became something of a zombie. Sick, exhausted, and diarrhea so bad I thought I was dieing. I could not speak unless I drank a swallow of water first and then only for a few words. Hydration during that time was not a problem cause I drank about three to four gallens per day.

Through all of that I still worked, but did use some sick leave on occasion. I still work today full time and will continue until retirement at age 60/62 baring any other problems.

BB

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Damn the Torpedoes! Full speed ahead! Adm. D. Farragut.

Started Atripla 8/18/06 and if I eat the right food when I take my meds, I get to go on a-trip-la.

............................................ Seriously, I am a little tired of the not-so-sick lying around home on Disability. Notice I didn't criticize the truly ill. I have friends in the latter category......................................................................... So far I've been blessed so far ........................................

I haven't seen this statement here for about two years, and I hope it is another five years before I see it again. Listen up my friend. There are many of us here that would give you both of our balls if doing so would give us the strength and ability to go back to work. Generalizations like this, stated in an "HIV/AIDS Support Forum", are not only out of place, but let the reader know that the author knows nothing about "Living With HIV".

I would ask all of you YOUNG people to get a clue, and realize that many of the people on this forum are here because that is just about the true extent of what we are capable of doing, and when you have been living with the full effects of this very DEADLY illness for 20 years or more, then you can come back with your flippant ideas about who should be working and who shouldn't.

I found out a very long time ago that judging anyone with this disease is not for me to do, and to that end, I try not to get too personal, EXCEPT with those like this author who is obviously not educated on the realities of living with this disease.

In Shock and Awe...................................

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I was one of those who avoided testing for many years, even though I had good reason to believe I was positive. When I did finally test, my cd4's were 79 and my ratio at 4%. Numbers aside, I felt pretty good, and I was never sick.I worked for another 7 years, and then the shit-hit-the-fan all at once. Lipidystrophy, fatigue, psoriasis, arthritis, neuropathy, sinus infections...I just got bombarded with something new at every doctor appointment for about six months. My work required 50-60 hours per week and 2 months per year of travel and tradeshows, and I just got to a point where it was no longer feasible. My health was affecting my work, and my work was affecting my health, and both were suffering. After nearly 20 years at a job that I loved, I went on disability in 2001, and that's where I'm at today.Yes, I hate it. It's boring, and it's not good for my self-esteem, and I feel very stuck. The irony is that it has given me the time to take better care of myself and feel better, but to what end? If I were to return to work full-time, I would be right back where I was within a few months. I know this, because I've twice attempted to participate in the trial work period, and it took just a couple of weeks both times to know it wasn't going to work.I'll never say never, and I would like to return to full-time, but I just don't see it heading that direction at the moment.I also don't appreciate the comment. "...I am a little tired of the not-so-sick lying around home on Disability." You just don't know people's situations. Some are able to appear "not-so-sick" a lot of the time only because they are no longer working full-time, which allows them to get adequate rest, exercise, nutrition, and simply attend to their bodies and health.

Someone earlier in this thread made an attempt to criticize those they thought shouldnt be on disability. Please excuse my rant.

As someone who has worked and contributed to the Social Security system for over thirty years I feel entitled to draw disability payments when I need them. Social Security disability is an insurance program. FICA=Federal Insurance Contributions Act. Its not a handout. It is insurance. No matter how the government has mismanaged the program is not my problem. For someone with HIV/AIDS it is not easy to qualify for benefits. Ask anyone who has tried to qualify. You must truly be disabled.

If social security can spend billions on attention deficit disorder and other maladies to individuals who have never paid a penny into the program, they should definitely help people in our situation live modestly while ill.

Im working now, but if the day comes when I must choose between my health and work, my health will definitely come first.

I believe I was the one, two years ago or so, who made a similar comment. And just as is being done know, people are taking it out of context. Am I the only person who read the same statement to include the "NOT SO SICK" and "NOTICE I DIDN"T CRITICIZE THE TRULY ILL" portion of the statement?

Is there anyone here who doesn't truly feel that there are people who are HIV+ and are abusing the system? Which I do believe is the point this person was trying to make?

And I'm sorry. Believing this is not necessarily "NOt knowing nothing about the reality of 'Living with HIV'", as one poster puts it. It's simply being realistic and pointing out a flaw in the system.

I'm sorry! It irks to me no end when some other poster make a comment to someone esle who is HIV+ llike, "the author knows nothing about "Living With HIV", or "I would ask all of you YOUNG people to get a clue..." and so on!

I have to ask. I'm 35 and have been living with this disease for over 15 years. Is that close enough to share this "flippant" and factual truth about society or should I wait anther 5 years?